I’ve had many things that I’ve had to fight in my life. I had a tumor that caused me to break my arm 5 times before they operated when I was 15, I was told I had fibromyalgia, chronic fatigue, IBS….I have a wheat allergy, probably celiac-disease, hypothyroidism, I’m bipolar, I’ve been raped, I’ve been divorced, I was in an abusive relationship…..Everything I’ve been though I came out fighting, and I persevered.
Then I got Meniere’s Disease. At first it was really no big deal. I would have an attack every once in a while. Sure I was a little off-balance, but I’ve been a klutz most of my life, and I had constant ear infections growing up, I was used to my ears bothering me. My ENT gave me tubes, and that seemed to work, for a while. (Dr. Kaylie thinks I was really just going through a good time again, and the treatment wasn’t really working. I don’t know. It seemed to work for a couple of years.) Then starting the beginning of last year the Meniere’s went bilateral, and I haven’t been the same. I went from an independent person to a person who has to depend on her husband for nearly everything a lot of the time.
There are 3 major things that make this disease so very hard for me to deal with.
- I’m afraid most of the time. Not just of having an attack, now don’t get me wrong that scares me, a lot. But I’m also afraid that every little happy thing I do, that it may be the last time I get to do it. For example, I’m afraid I’ll never be able to drive again. When I try to do something that makes me dizzy, I think, “I may never be able to do this again.”
- I feel like a burden. I know my husband says I shouldn’t. But I often do. I can’t do a lot. And so many of my friends have just dropped of the face of the earth, I have to feel like they just couldn’t handle it. Their lives are too busy to handle having a disabled friend….it’s just hard.
- I often feel like I don’t have anything to fight. (I have to depend on the doctors for everything. I can’t do anything to try to fight for myself.)
But I’m realizing I’m wrong on most of those accounts. I’m beginning to look at things differently. In part because of some of you, because of my darling husband, and my pretty smart therapist. (who I made cry this week….I really do need to stop making people cry. I’m so happy that people care about me, but I hate making people cry. You know I say that, and I mean it, but then in a small way, it warms my heart that someone cares that much about me.)
Better ways to think of things:
- I do need to have a little bit of healthy fear, so I will recognize when an attack is coming, so I can try to head if off. But I need to treasure the things I do, if I don’t get to do them again, at least I will have these precious times. I also need to remember, that we are working to get this Meniere’s under control, and I may be able to do many things again.
- My husband doesn’t feel like I’m a burden. He is so grateful for that he can be here for me, and it bothers him that he can’t do more. As for my friends. As our lives change, sometimes we lose friends, and we gain other friends. It doesn’t have to be because I’m disabled. It could be for any number of reasons. Perhaps, it’s just this time in our lives that our friendship isn’t working any long.
- My attitude about things can be a good fight in itself. Working to find out as much as I can about my disease, and what can be done. Simply taking my medication when I feel like an attack is coming on is fighting. I need to realize that I am fighting, and I’m constantly finding new ways of fighting back. I will not allow this disease to take away my hope, or my desire to fight.
There may be times that I forget this:
When this happens, I hope that you (my friends) will kick me in the butt and point out what I have said here and get me back on the path I want to follow.